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30 September 2010

Yesterday was rough. It doesn't get any easier seeing him like this: chest tubes and drains, on more IVs than I've seen in my life, chest open and covered with tape. And I thought about the other families here: how for different reasons, they are walking their own paths of grief. No one really wants to be here. Everyone wants to go home, and with a healthy (or healthier) child.

My arms feel so terribly empty without him. Right now about the only parts of him I can touch are the top of his head and the bottoms of his feet. Sometimes I manage to get a little bit of his leg. I remember another heart mom saying that she kept a stuffed animal with her since her instinct was to hold and cuddle something after birth. As so I've been sleeping with a stuffed giraffe Ewan's great-grandparents bought for him. I'm hoping Ewan can cuddle it soon himself.

We're starting the day on a positive note, having heard that the lung that was mucky and collapsed yesterday is clear and sounding good today. The nurse even said she had to turn down the amount of O2 he was getting because his lungs were that much clearer. He's very negative on his fluid balance as of this morning (just over 400ccs) which is exactly where they want him to be. The nurse said he even kept peeing after they stopped giving lasix. I told her that all Petermanns are overachievers.

And so I've been praying like Eliezer -- and I know you have too. That today is the day Ewan can come off of ECMO safely. Lord, grant us success. Lord, grant us victory today. Saint Pio, pray for us.Hail Mary, full of grace ... these prayers come from my lips steadily and in a stream, one right after the other. I anointed him this morning with some Padre Pio Blessed Oil as I prayed over him. Please Lord, make his little body ready for this. I have hope that this is what the past 24 hours of our collective prayers and the wisdom of our doctors have wrought.

I have hope that, after this bit of trouble, we can have more days like this, but minus tubes, wires, and vents. Please Lord, grant us success. Grant us victory today in getting Ewan safely off of ECMO.

I love that you have the stuffed giraffe to cuddle with. Our son Ben was given a brown blanket and I did the same with the blanket and now it is his favorite and we have to bring it everywhere. I hope he soon gets to cuddle with the giraffe as well.

This beautiful brings my heart even closer to yours. I am astonished by the clarity of thought and expression you continue to have through all this. It perhaps is healing to channel all these thoughts and emotions into a steady stream of communication here to all of us (which I know can also be a form of prayer to God).

Loving Ewan and praying for him like Eliezer off the ECMO machine today. Praise God for his goodness in these last 24 hours!

The prayers of the righteous man avail much, the bible says! The power of God is available to us when we pray...imagine that God's power bestowed upon each of us in this effort of righteous intercession...and God honors us in His Son. With each prayer we stand within the throne room of our might Father God and He honors each warrior that approaches the throne with Yes and Amen! God thank You that this family, this child that has been faithfully and lovingly set apart for You alone is doing well today, and each second... with each step let Ewan Eliezer excell in the divine health that Christ purchased for Him at Calvary. We are all in agreement here Lord, and because there is no time or distance in christ...Your Word promises that where 2 or 3 are gathered in agreement there TOO are YOU! We welcome and rest in Your presence LORD, even as we remain in continual prayer and hope in Christ!Go Ewan Go! Much Love...Amen and amen.

The prayers of the righteous man avail much, the bible says! The power of God is available to us when we pray...imagine that God's power bestowed upon each of us in this effort of righteous intercession...and God honors us in His Son. With each prayer we stand within the throne room of our might Father God and He honors each warrior that approaches the throne with Yes and Amen! God thank You that this family, this child that has been faithfully and lovingly set apart for You alone is doing well today, and each second... with each step let Ewan Eliezer excell in the divine health that Christ purchased for Him at Calvary. We are all in agreement here Lord, and because there is no time or distance in christ...Your Word promises that where 2 or 3 are gathered in agreement there TOO are YOU! We welcome and rest in Your presence LORD, even as we remain in continual prayer and hope in Christ!Go Ewan Go! Much Love...Amen and amen.

The prayers of the righteous man avail much, the bible says! The power of God is available to us when we pray...imagine that God's power bestowed upon each of us in this effort of righteous intercession...and God honors us in His Son. With each prayer we stand within the throne room of our might Father God and He honors each warrior that approaches the throne with Yes and Amen! God thank You that this family, this child that has been faithfully and lovingly set apart for You alone is doing well today, and each second... with each step let Ewan Eliezer excell in the divine health that Christ purchased for Him at Calvary. We are all in agreement here Lord, and because there is no time or distance in christ...Your Word promises that where 2 or 3 are gathered in agreement there TOO are YOU! We welcome and rest in Your presence LORD, even as we remain in continual prayer and hope in Christ!Go Ewan Go! Much Love...Amen and amen.

Kirsten,Your posts always bring me to tears. They're so heartfelt, I can literally feel your heartbreak in your words. I admire you so, this has been such a tough journey for you and your hubby so far and for Ewan, but what a tough and incredibly strong little boy he is. He can do this. We're praying and remaining hopeful just like you and all you are anxiously awaiting your post that announces him "free of ECMO". Love and hugs to you friend.

You are so strong, I'm scared to of what is to come for us later. I read your site and see your support and hopefully I will be as strong as you. Thanks for sharing in your most intimate time and we are most definitely praying for you. Good advice on bringing a stuff animal.